16 August 2010 ~ 10 Comments

What does awareness mean to me (an article in honor of National Autoimmune Diseases Awareness Month – March 2010)?

For me awareness is about taking responsibility for our own lives. But when it comes to certain specialized topics, it’s simply not possible to know as much as we need to sometimes. I consider myself to be a pretty observant person and because my job involves tons of research, I also read a lot. However, I – like so many among us – couldn’t even locate the thyroid before I was diagnosed with Hashimoto’s. Why is this? It seems that society tends to focus on other more “newsworthy” diseases such as diabetes or heart disease and yet both of these can actually be caused by malfunctioning of the thyroid.

It’s also important to note that both Hashimoto’s (an underactive thyroid) and Graves’ disease (an overactive thyroid) are autoimmune diseases. This means that the body is attacking itself with its own antibodies, treating the thyroid or another organ as if it were a foreigner in its own host or an unwelcome stranger. And when we come to the topic of autoimmune disease, it’s important to know that autoimmune diseases have the pesky propensity to gang up on you and often come together. This is why several thyroid sufferers complain of accompanying diseases such as Raynaud’s phenomenon, celiac disease, Sjögren’s syndrome, lupus and diabetes. And, of course, there are many others. I’m currently reading Mary Shomon’s book on precisely this topic so that I can find out more about them.

Since my diagnosis I have found myself developing a passion for raising awareness for this “ugly step-child” of diseases and I have also found that my passion has positively infected others who have told me how they have started telling more people about the disease. It’s like a game of dominos really – we just have to topple the first one to start spreading the word. In my case, I was particularly inspired by my fiancé’s late mother-in-law. I only ever knew her when she had cancer, but she was an incredibly strong woman. She was unbelievably stubborn, proud and aware and refused to admit weakness even shortly before she died. In the last few days, we saw her deteriorate, but what always struck me about Gayle Fischer was the way she took charge of her own illness, did the research she needed and insisted that the doctors listen to her. Both her sons suffer from chronic illness and we are working on getting them as well as possible, but I am spurred on by the inspiration that she endowed in me.

What are your experiences with autoimmune disease? Do you have any autoimmune diseases other than thyroid disease and what are your suggestions for raising awareness?

Looking forward to hearing from you!

Love,

Sarah

10 Responses to “What does awareness mean to me (an article in honor of National Autoimmune Diseases Awareness Month – March 2010)?”

  1. Graves Disease symptoms 11 January 2011 at 7:17 am Permalink

    Congrats on the fantastic internet site! Reads very well and seems to be fantastic.

    • Sarah Downing 15 January 2011 at 1:28 am Permalink

      Thank you very much!

  2. anita 18 January 2011 at 11:54 pm Permalink

    hey sarah! great post. ugly stepchild indeed! you nailed it. and the cluster factor is, well, a cluster….

    having hashi’s, gluten intolerance, and some strange RA/lupus hybrid, i struggle daily with multiple issues.

    -first and most aggravating and fortunate, buy turns, is the fact that i “don’t look sick.” sigh. i’m glad i don’t look like a walking disease, but my body is going crazy on the inside and things don’t look nearly as normal.

    – nutrition. i have to spend a chunk of every day fighting to get enough vitamins and nutrition, even tho i eat a wide range of healthy foods. the average person eats a balanced meal, steps away from the table and says: “right. done and dusted. vitamins in, illness thwarted.” not me. it’s always a struggle.

    – pain. pain pain pain. that’s enuff on THAT little subject!!

    -weight issues, water retention, stiffness, fatigue, depression and the list goes on.

    fortunately, like you and the afore mentioned Gayle Fischer, i am educated, strong, determined and invested. so, while life isn’t perfect, it’s good to be alive!

    rock on and i look forward to reading more from you.

  3. Sarah 19 January 2011 at 12:04 am Permalink

    Dear Anita,

    Thank you very much for your insightful comment.

    I know all the shit you go through on a daily basis and have always admired your strength, determination and ability to research. You have taught me quite a few things too.

    I know what you mean about people saying, “well, you don’t look sick”. This is retarded. You don’t have to look sick to be sick. This is why illnesses like ours are often termed invisible illnesses. I talked a bit about this in another article of of mine on stigma and illness throughout history (http://sarahjdowning.com/2010/11/15/fwbw-16-prejudice-discrimination-and-the-need-for-education/).

    There are too many possible symptoms to keep count of and it’s vital to be your own advocate because you can’t just rely on doctors to get you well.

    Rock on yourself, my red-headed sister, and keep reading!

    Love,

    Sarah

  4. lori 19 January 2011 at 1:58 am Permalink

    I couldn’t agree more, “awareness is about taking responsibility for our own lives” It was nice to read this again, Sarah! I am very sorry for your late mother-in-law, but so glad you were inspired by her to do what you do so well…researching and writing to help others and spread awareness. You’re off to a great start with Butterflies & Phoenixes!

  5. Sarah 19 January 2011 at 9:35 am Permalink

    Thank you very much, Lori. I know that taking responsibility for our own lives can be easier said than done, but I felt like I really had no other option if I truly wanted to get well. I guess I am lucky also that I was diagnosed when I was – had I been diagnosed later, who knows if I would have been as capable.

    Gayle Fischer was a tough nut, but she never stopped fighting – admirably, right up until the very end (we were with her one week before she died and she would still insist on doing so much herself. What an inspiration!)

    Love,

    Sarah

  6. Miles Tenbrink 29 January 2011 at 8:56 pm Permalink

    Good site!

    • Sarah Downing 1 February 2011 at 11:35 am Permalink

      Thank you, Miles.

  7. RKay 11 November 2013 at 10:34 pm Permalink

    The autoimmune disease that most commonly occurs with Hashimotos is Rheumatoid arthritis. RA is an often misunderstood disease too. Most people believe it to be osteoarthritis. Arthritis is only one symptom of this systemic autoimmune disease. After 7 years with RA I have been found to be hypothyroid. Will be tested for hashi’s next. Thanks for your blog.

    • Sarah Downing 11 November 2013 at 11:16 pm Permalink

      Thank you very much for your comment, RKay. I wonder whether treatment for hypothyroidism might actually serve to ameliorate your RA symptoms. That would be interesting to see. It is certainly true that autoimmune diseases are so closely interconnected.

      Good luck!

      Sarah


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